Friday, January 30, 2009

Actually, documentary review. Crazy Sexy Cancer aired on TLC semi-recently, but as I don't have cable, I found out about it through my extensive food readings and eventually landing on Kris Carr's blog (just today relocated from here).

Kris finds out by accident that she has a very rare cancer -- she thinks instead that she might have hurt herself during yoga. But no, she has cancer, in the form of several tumors throughout her liver and both lungs.

Because Kris's cancer is so rare, doctors don't have any established way of dealing with it. Her doctor tells her that often in cases like hers they wait for the cancer to make the first move and then respond to it.

It's the absence of medical options that leads Kris to seek healing along other routes. She starts by browsing at an alternative-health exposition:

Like Alice in Cancerland, I felt like I was falling down a new-age rabbit hole. I doubted the cure for cancer was hidden among the crystals, and yet doing nothing felt so disempowering. So I became a full-time healing junkie, willing to try anything.

Kris pursues all forms of healing that she stumbles across: new-age approaches like healing massages, Chinese herbs, and chakra cleansing, and then extensive research that leads to a macrobiotic diet followed by fasting and going raw. Along the way, she finds companions in other women dealing with cancer, and the camera follows all of them as they face their trials and seek recovery. Kris also finds love despite feeling, as she says, like "damaged goods."

Crazy Sexy Cancer is funny, sad, and brave. It's relatable regardless of the viewer's background. For those of us with chronic diseases, it can be a great friend. Seeing what Kris goes through in pursuit of healing, seeing her cry, seeing her get mad, wrestling with the lack of answers alongside her -- you know you're not alone.

One of my favorite parts of the documentary is when Kris goes back to where she grew up.

If only I could retrace my footsteps, could I find the moment when everything changed? What was the day like? Was it rainy, or was it pretty out? Did I fly too close to the sun? Did I step on too many cracks?

Kris goes to a tunnel through which a stream flows, a place where she used to play.

Maybe it was that I drank the water. Maybe it was that I used to lower my little pail down on a little piece of twine and I'd get water and pretend it was my kitchen and I drank it. Maybe this is where cancer came from.

These questions of her past -- how did this happen? What did I do wrong? -- sound awfully familiar, like they might be the rhetorical chant of all of us afflicted with some random disease.

Later on, Kris goes to a health institute for several weeks to eat raw and live among others pursuing healing. As we watch her swing on a trapeze -- facing her fear of heights -- she narrates,

In that moment, I realized that all my so-called failures were only in my mind. Cancer wasn't killing me: it was pushing me to live. Maybe my lesson was about patience and acceptance. If I could learn to make peace with my disease, even if it didn't go away, then I could do anything.

It's hard for me to express how the core ideas in this documentary resonate with my experience. I often felt like Kris was drawing her words out of my throat. And it felt so good to hear them in someone else's voice.

I won't pretend to know what it's like to have cancer. Chronic pain is a completely different existence. The women in this documentary are optimistic and astoundingly brave and I wish them all health and longevity and happiness.

But I do think there's much to draw on here for people facing any kind of disease. There's hope and humor and a ton of honest emotion, all of which Kris supplies regularly in her blog. Like Kris says, doing nothing about your disease is disempowering. Thankfully, when you can't do anything else, there's always the human bond.

Wednesday, January 28, 2009

So we're on this planet to have SEX, ultimately. You may believe in a god and think that we're here for some further, beyond-death purpose; that's fine. But we know for sure that every individual of every species exists as an attempt to extend the species' existence.

I can't have sex.

And we have sex by using stores of energy. We get that energy from food and sleep.

I can sleep, TYJ. (Thank You Jesus.)

But food -- sometimes my diet makes me want to move to Alaska, as if by running away physically I can escape these ridiculous constraints on what I can eat.

Yes, I've put those constraints there myself. Because when I was eating gluten I was achy and fatigued and my crotch raged. Because corn makes me nauseous. Because sugar disturbs, let's say, the various ways my body purges things. And because other tasty foods like orange juice and tomatoes and spices cause a flare in my pain.

I choose what I eat, but my experience has convinced me that eating those foods I avoid isn't worth it.

But sometimes I just want to eat them! And sometimes I do and then I pay for it. Except gluten. Gluten I treat like it's the Bubonic plague.

Now I've deduced that eating too little meat makes my pain worse. Too little meat! Three times I've noticed this -- the month or so I spent intentionally vegan, the last week or so when I felt like being vegan randomly, and the three days I spent eating only rice because my juicer broke (seriously. I was so heartbroken that I decided to go on an extreme elimination diet. One aspect of my pain settled down while another aspect of it got worse).

Whether it's the protein or the vitamins or the fat in meat, I don't know, but it seems when I eat too little of it, my urethra gets a whole lot pinchier.

Yesterday I ended my random vegan stint when I acknowledged that my pain was getting worse. I ended it with a can of tuna and woke up with a much less pinchy urethra.

UGH.

So often I say "I give up," meaning "I'm not going to try to solve my pain anymore." But do I ever stop? No. And I don't know why or how I keep going. None of it makes any sense. I know that even if I took all my observations to a big giant mega convergence of the best minds in a range of medical disciplines, I'd get a dozen different reasons why doing this does this to my body.

I'm adding supplements now to see what they do. I did a lot of digging about supplements for interstitial cystitis as well as vulvodynia, and I'll post about them when I'm feeling more organized.

Friday, January 23, 2009

Despite that inserting tampons is like playing a game of Operation (remember that one? Tell me it isn't EXACTLY like inserting a tampon when you have vulvodynia), I actually prefer tampons to pads because keeping my period inside me is a lot more comfortable than soaking my tender parts in it all day long.

However, the first day or so of my period is seriously heavy -- like one-tampon-an-hour heavy. (It used to be lighter but longer; must say I prefer it this way.) So I use pads plus tampons for a day, and I've come to realize that Always pads are a horribly evil product.

It makes me really sad -- Always are so reliable, and they're like magic the way they absorb the stuff and keep it on the pad. But just a few hours with one on is enough for me: they turn my crotch into a burny raw hell.

For tampons, I must use the ones with plastic applicators; using tampons with cardboard applicators is like sitting on a beehive for me. And I obviously need an applicator in the first place -- I need to not expand my vagina any more than necessary. That's why I can't use insertable cups -- the difference in width between tampons and cups is enough to make me scream. Plus with cups you have to wriggle them around...shudder shudder shudder...

I've thought about buying some Glad Rags for those heavy days but just haven't gotten around to it yet. Has anyone tried them? For now I switched to Kotex, which are far inferior to Always in design but seem a little more tender on my skin.

NVA supporter Alexandra Carmichael, a scientist and former vulvodynia sufferer, is conducting a study on vulvodynia through the website she co-founded, CureTogether. Specifically, she is gathering self-reported data on symptoms, treatments, and triggers for vulvodynia. Her goal is to discover associations in this data to help characterize which vulvodynia treatments work best for patients with different groups of symptoms. With enough women, a genome-wide association study can be conducted to locate any genes or genetic regions that are associated with vulvodynia.

There are currently 155 women with vulvodynia who have joined the CureTogether study. A genome-wide association study requires 2,000 patients, so at this time Alexandra is calling for women with vulvodynia to join the study. Participation is entirely voluntary, anonymous, and completely confidential. It involves joining the CureTogether study at the website provided, then checking off and rating symptoms and treatments. It should take 15-20 minutes to complete. Statistics for the study are posted live so you will be able to see them after completing your entry. You will also be notified when the genetic study is set to begin, with an option to participate or not.

About CureTogether: CureTogether helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research.

CureTogether is a great resource for a mystery condition such as vulvodynia -- it enables sufferers to compare symptoms and treatments, expanding the knowledge base from doctors and vulvodynia literature to include patients themselves. And honestly, I think I've learned more about vulvodynia and interstitial cystitis reading about patients' experiences than I have from any other source. Kudos to CureTogether!

Saturday, January 17, 2009

Right now, it's a rundown of vulvodynia facts plus a handful of the most helpful (non-blog) vulvodynia resources I've found on the web. Please let me know if you have suggestions, amendments, or content you would like me to add. I tried to keep it relatively brief while hitting the most salient vulvodynia tidbits I'm aware of.

Honestly, I wrote most of it from memory, so if you see any factual errors, give me a shout out!

I thought about adding all our blogs but wasn't sure how people would feel about that. If you want me to add your blog, please let me know. (Mine's only in my Squidoo profile so far.)

And please, if you see any typos, tell me! It's late and my eyes are refusing to proofread.

The University of Ottawa is seeking lesbian, bisexual and other sexual minority women (e.g. queer, unlabeled, nonheterosexual, etc.) who are currently experiencing vulvo-vaginal pain, genital pain, and/or pain during vaginal penetration (with fingers, sex toys, penis, tampons, etc.) to participate in an online research study. In order to participate, women need to be 18 years of age or older.

Eligible participants will complete an anonymous and confidential online survey that includes questions on the current experience of vulvo-vaginal pain, gynecological history including a consultation history, sexual functioning, relationship satisfaction and demographic information. This survey should take approximately 30 minutes to complete.Women who are interested in participating are asked to visit the University of Ottawa’s Human Sexuality Website for more information and to complete the survey (www.sciencessociales.uottawa.ca/hslab-labosh/eng).

Wednesday, January 14, 2009

It's hard enough to keep my optimism up against the interminable pain when I'm feeling okay mentally. When I'm depressed, it's impossible. The pain just lubes up the downward spiral.

Like, will I be in pain for the rest of my life? Will I ever have normal sex again? If I'm ever in the position to have children, will I be able to create them without using a turkey baster? Will it hurt every time I pee until that last and final pee that happens after I'm already dead and my body lets loose?

Seriously: in 1996, the day before winter break of my junior year in high school, we had my dog put to sleep. She had kidney failure. That morning, I woke up and threw myself next to her on the floor of our den where she was convulsing. Later, right before leaving for school, I walked down the gentle slope of our backyard to where she had wandered trying with every step to pee. She hardly noticed me as I petted her and kissed her head and murmured my sobbing whatevers to her. She probably couldn't even hear me. She just kept trying to pee.

I've reflected on that moment often when analyzing death and illness. In extreme illness like that, a being's world narrows to this moment, this moment, this pain, this pain. If, somehow, the hand of the universe had touched Sunny's head that morning and freed her of her sickness, she would have climbed back up the hill and back into the range of awareness with which we all function while well. Instead, as her illness drew her towards death, it sealed her off from the rest of the world until all that existed was her pain.

I do not have kidney failure, and my illness is not terminal. But pain and depression are both narrowing conditions. When they overtake you, you seep down into them like through a cloth that can't hold you. You're focused on this moment and this pain, whichever kind of pain it is.

Well, I brought my TV into my bedroom and now I'm feeling better. My bedroom is tiny, making it super warm in the winter, and my bed is much better for my body than my couch. If I'm going to be a couch potato, I oughta do it in style.

Tuesday, January 6, 2009

A couple posts ago I wrote about how I felt worse while vegan and suspected that the Pepperoni Pizza Hypothesis (which I've now referenced 400 times) could be true for me -- certain foods irritate my gut, which then refers pain to my southern region. So I become non-vegan again, adding back eggs and occasional meat -- and voila, I feel better.

This fall, before and during veganism, I had increased bladder sensitivity, pinchy urethra pain, urgency, and all-over burning that occasionally spiked to near-record levels. Upon giving up nuts and seeds, spicy foods, onions, and tomatoes, my entire coochie calmed down. There is still some residual pain and, of course, pain during urination, but it was like slamming on the brakes on the highway: the change was plain and clear.

Plus, I have had nearly pain-free orgasms! Like two of them! I know, why does one keep attempting orgasms when they cause pain? For one, I remain a sexual being, somehow, and for two, it's a measuring stick, so to speak -- an unmistakable indicator of my coochie's contentment. (Please note that these orgasms have not come with penetration. Nothing is going in there for some time to come.)

So while I think I may have actually figured out the mechanism behind at least part of my pain, I'm still struggling with the exact shape of the new diet. When you're not on a strict elimination diet, cutting back to the bare minimum, it's hard to tell which foods are setting you off. I eat a lot of black pepper, and I think I've been better on the days when I've omitted it, but how can I be sure? I'm using this chart as my main guide, and as time goes on, I'm closer to convincing myself that an elimination diet may be the best way to go. I've accumulated this much self-discipline when it comes to food; what's several weeks of complete denial? Ha ha ha...

Yeah, a little overwhelmed -- I had a self-pity date with gluten-free chocolates I found on my parents' counter over the weekend. But I can do this, I know. I am the food master.

Thursday, January 1, 2009

It's one thing to speak out about your favorite political candidate, your abortion stance, your religion or lack thereof, your ideas about the president, your ideas about the way others live.

It's another thing entirely to speak out about vulvodynia. Vulvodynia involves one of the most giggle-inducing parts of the human body. Not only that, it involves MY giggle-inducing part and how it's doing today. Which would you rather put up on the public shelf -- your thoughts on Barack Obama or the status of your crotch?

It only makes sense that every time I share my posts elsewhere online, I wince a little. Who wouldn't? We all know we never really outgrow middle school -- we just learn to operate around that idiot part of our brains. I'm sure that some people find my vulvodynia as laughable as headgear.

Plus, relative to political issues, vulvodynia is boring. While some eddies of medical discourse can get heated at times -- diets, for example -- most health topics are matters of fact, not opinion. When I talk about politics, I'm a sexy, opinionated citizen of the world thrust into battle with menacing rivals. When I talk about vulvodynia, I'm a schoolmarm in lecture, glasses low on the nose.

Regardless of the fact that medicine will influence most people's lives far more than discrete political issues or particular political personalities, people will always chant more about politics than about diseases. How much sexier to quantify your hatred and offense on one side of the latest hot-button issue! Well, take it from someone who knows: hot-button issues figure much, much less in life than the state of one's own personal hot button, even if talking about it couldn't be less sexy.

Me?

I have chronic pelvic pain. Feel free to contact me with any comments or questions at madpeachblog AT gmail dotcom. If you're on Facebook, you can find several support groups there for vulvodynia and pudendal neuralgia. I've drawn a lot of support from those groups. Best wishes to everyone out there dealing with this pain. I hope there's a bright future ahead for all of us.

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If you have a pelvic pain story you'd like to share on my blog, please email me at madpeachblog AT gmail. Your post can be completely anonymous. There are many women out there who would love to hear your story!